Wednesday, April 10, 2013

Going for a ride...

Priscilla and Brown Bear
Priscilla and Brown Bear, who have been with Ed in Cooley Dickinson Hospital, took a ride today to Elaine of Hadley!  And, yes, Ed joined them and is there tonight and he was going to sleep for the night when I left.  Hallelujah!  Goal #1 achieved!

Yes, the last two days have been tough and the move to Elaine was swift and a bit rocky, but it was Ed's goal and he achieved it (and we got into the rehab facility we wanted).  So I'm sure over the next few days I'll tell you all the things I don't like or are a problem, but for this moment, I'll enjoy this momentous occasion.

This morning was a fairly good morning for Ed (except that they forgot his breakfast which is never a good way to start your day).  But he woke with energy and even more exciting is that he did great with physical therapy.  He did the leg lifts while in bed, got himself into a sitting position, and then walked beyond the red tape, through the door, and into the hallway!  Unbelieveable.  Of course, he was a bit tired after that, but all-in-all it was great!  I know...in total contrast to yesterday.

I left for work mid-day and so I fully expected the "bad" part of our day to then begin.  While I was away, they did drain 3L of fluid, so that is not slowing down but Ed felt less "full".

The crazy part of our day was at 3:30 when Matt came in to tell Ed he was being transferred to Elaine.  I was at work still but my mother and sister were with Ed and my sister called me right away and so I returned to the hospital right away.

We were quite surprised by this because as you may recall, a few days ago we were told 3 more days in the hospital, so we had Wednesday in our minds.  But now they were saying he's ready to go.  Now there were really no major reasons why we had to wait until Wednesday (except this felt sprung on us this afternoon) and we definitely didn't want to wait and risk losing the bed at Elaine.  So we decided to do it.  Of course there was still the question about the staples on Ed's incision.  Dr. Marvelli did not remove them this morning because he was told Ed was not being transferred until Wed so he was just going to wait until Wed.  Matt ended up taking them out (28 of them).

And we were also told the ambulance would be there at 6:15 to transfer Ed.  Well, I think it was more like 7:15 before they arrived (hospital time is so different than real time).  However, we were forgiving of the delay because Christina (Ed's nurse the first day) was on duty tonite and she came down to give hugs and say goodbye before we left.  So that made sitting around and waiting worth it.
 
Once we arrived at Elaine, though, there were some issues which I'll bore you with tomorrow (hopefully they all will be resolved by tomorrow so my perspective will change).

So today can be categorized as a "good" day overall.   Thank you for your thoughts and prayers.

Next goal:  For Ed to walk (at least more easily and further than 10 ft).

Tuesday, April 9, 2013

Tiredness

Monday was not a good day for Ed.  He is tired and has no energy.  He forced himself out of bed for dinner but only walked enough to get to the chair.  He is trying to eat although nothing appeals to him.  They drained another 3L of fluid from his abdomen late morning.  Of course, the more fluid that is removed, the more proteins are as well.

It was an emotional day as well as we talked to Dr. Bowers, Matt (NP), and Dr Zesiger (palliative doctor) at various times throughout the day.  Everyone there seems to really like Dr. Z...I can see why and the same level of comfort we found with Dr. Bowers, we recognize in Dr. Z.

The swelling continues to go down...really just in his ankles and feet now.  But Ed is discouraged by the loss of muscle tone.  Like I care...

We did not talk about moving to Elaine on Monday.  The fluid is still infected and the infectious disease specialist was consulted in terms of antiobiotics.  His liver continues to work hard but is failing.  So we continue to take it day by day.

Ed did try to watch the Red Sox opener but with the parade of doctors and nurses, he really didn't see much of it.  I think they won...

I have to say, though, the nurses have been tremendous.  And you know you've been there too long when you get to know all of them.  And for them, they typically see patients move in and out in a few days, so Ed has been a great source of education for the wonderful student nurses who work there as well.  And since they usually only work one day a week, it is rare to see the same patient again.

Today is another day.  May your prayers today be for comfort for Ed...



Sunday, April 7, 2013

"One Step Forward Two Steps Back"

That's how Ed saw today...although I corrected him that it was more like 1 step forward, 1/2 step back.

Today started as a good day.  Ed worked to get out of bed twice again today.  This morning he lifted himself to a sitting position, stood, and then walked further than he has before--across the red tape on the floor and towards the door.  This was a major accomplishment!  We were so excited to see him lifting his body and walking this distance.  He spent a couple hours in the chair and had his lunch there.

While sitting in the chair, his colostomy filled pretty quickly with fluid--it was abdominal fluid leaking from around the stoma.  Earlier in the week, this was leaking from his incision and the stoma area.  Thankfully there didn't appear to be any leakage from the incision today.  We hope that means there has been enough healing in that area so it doesn't happen.  They then got Ed back to bed to drain fluid to relieve the pressure.  Total for today was 4 liters.

Just before dinner, Ed decided to try to get back up, walk a bit, and get into the chair for dinner.  He did a great job getting himself into a sitting position.  Unfortunately, when he got up his blood pressure plummeted.  He did make it to the chair, but it took a good 45 mins for him to feel better.  They administered Albumin and a bag of saline to help replenish fluids he lost.  This was a very down time and Ed was very discouraged.  He also lost his appetite and didn't feel like eating.  But, even though discouraged, he forced himself to eat some of his dinner since he knew how important that was.

A couple hours later he returned to bed and they drained his colostomy bag which was beginning to fill with fluid again.

This just sucks...no other word for it.  When his blood pressure plummeted and he felt awful for about an hour, it was a low point for him...very discouraging after a good morning.  And we're concerned that the fluid is still accumulating quite a bit such that it begins to leak from his stoma area.

Ed and I will have a meeting tomorrow with a doctor from the palliative care team.  Matt, the ICU nurse practioner, talked to me about this today and I asked him to set this up.  I mentioned it to Ed and I think he understood it at some level.  This is a difficult step to take and just reinforces the inevitable.  But I'll keep my chin up and we'll learn more tomorrow.  As I understand it, this support will be critical as we continue our journey.

At this point, they're saying three more days in the hospital and then hopefully to the rehab facility.  An infectious disease specialist is supposed to be consulted.  Plus we need to consider the volume of fluid he is producing.  Elaine of Hadley does have a hold on a bed for Ed.  Let's hope they'll hold it a few more days.

I'm trying hard to keep my spirits up the best I can for Ed.  But the sudden unexpected down points are reasons I spend my day next to his side.  We're trying to find a balance and I'll try to continue to work some hours each day.  Ed is hoping once he's at Elaine, that will be more convenient for me and we can work out a better schedule.  Right now, though, that is hard to plan for and Ed is my first priority.  But leave it to Ed to worry about what is most convenient and best for me.

We have agreed that our ultimate goal is for him to be home.  We cannot predict when that would be and what his condition will be when he returns home, but there is no disagreement that this is what we want.

First step though is getting to rehab.  I just hope we can slow down the amount of fluid that is accumulating.  We can fully handle a liter a day, but 4 liters and leaking from his stoma area is of concern.

And the beat goes on...  Please keep praying for improvements...



Saturday, April 6, 2013

Count it as a good day...

Although I'm cautiously optimistic, I would rate today as a "good" day.

When I arrived, Ed was having some pain in his right side where they had inserted the catheter.  Early afternoon they checked that out and the area was a bit inflamed.  They gave him Ketorolac to relieve the pain and it seemed to do the trick and Ed was much more comfortable the rest of the day.

Ed's big accomplishment today was that he got up and out of bed twice today.  Both times he walked a little bit (pushed himself further each time) before getting into the chair.  He was able to eat both lunch and dinner while in the chair (how much nicer that is).  And with each move to/from the bed/chair he did so with a bit more strength and energy.  I know he pushed himself to do this and I'm so proud of him since I know it wasn't easy.

They did drain his abdomen again today (this will be a daily event for now) and removed 3 liters of fluid.  The swelling in his legs is going down as well and this is helping Ed psychologically as well as physically with trying to move.

Dr. Marvelli stopped in again this morning and said that Ed wouldn't be going anywhere this weekend.  Ed's Nurse Practitioner for this weekend, Matt, also talked to us this afternoon and explained that they need to monitor the fluid and keep an eye on infections and adjust antibiotics accordingly.  He mentioned that they may get an infectious disease specialist involved.  He also mentioned that Ed's white blood cell counts were down (almost normal in fact) which doesn't make sense since this is usually high when there's an infection.  Regardless, until they feel Ed is stable in this area and they know exactly what antibiotics they should be administering (and being sure they know how Ed reacts to any change), Ed would not be going to rehab.  Matt was thinking it would be a few days.

Ed and Dan watched the Red Sox this afternoon and then they watched one of the NCAA final four games this evening.   Ed's spirits were better. I would attribute this to the fact that the swelling is going down and he is able to walk more...and the fact that Dan is home.

So overall a good day.  Good vitals, good progress...  Just being cautiously optimistic since I know tomorrow can easily not be as good.  But we'll take today and be thankful.

We are hoping Ed gets into Elaine in Hadley for rehab, so please keep your prayers coming with our next goals being for Ed to stabilize and also for Elaine to hold a bed for him.

Onward...

Friday, April 5, 2013

What Day Is It?

I wish I could come up with fancy titles for these entries.  We are beyond the point of counting days from surgery (I gave that up last week).  Sometimes titles come to me...other times they don't.  Hence, some posts are simply titled with the day/date.

As I write today's summary, I'm sitting with Ed in his hospital room. He's watching the Red Sox again (which is a good sign since he loves to watch them) and I'm on my laptop...pretty much what an evening at home might be like.  I would normally leave around now since Ed is settling in for the night  (really, "normally"...how sad that this is now a "norm").  However, Dan is on his way so he can be home for the weekend.  He's driving straight to the hospital so he can see Ed tonight.  Now there's certainly a bright spot in our day!

Speaking of which...  When I got here this morning, the PTs had gotten Ed up and he was sitting in the chair.  The first thing I noticed was that the swelling in his legs had gone down considerably!  Yeah!!  Yes, there is still some pretty good swelling, but certainly much better.  And Ed said he had taken several steps with the walker to get to the chair.  It was slow, but he did it.  So more progress there as well.  Dr. Marvelli also said the wound looked good and is beginning to heal so the wound vac was removed.  Our day certainly started out brightly.

However, brightness can only last so long.  At lunch time, Rob (our PA) came in and stopped Ed from eating anything.  There was still concern about the fluid that was continuing to accumulate in his abdomen and so they wanted to insert the PleurX drain.  This could be done with local anesthesia but he couldn't eat anything.

If you recall, two days ago I said that they couldn't insert the drain if there was an infection and they confirmed the fluid was infected.  That is still true--that is not ideal.  However, Ed basically needs to be drained daily otherwise his wound will not be able to heal.  With the regular draining and antibiotics the hope is that eventually the fluid that is drained will no longer be infected and once that happens and his wound is healed, the infected drain can then be removed.

Did you get all that?  Yes, it is confusing.  But it was consensus that we needed to get the fluid out and keep it out and this was the only option.  Solve the predominant problem first.  So at 4 PM we headed back down to Interventional Radiology in the basement at Cooley to see Dr. Gates.  I was able to wait down there (where there is no cell service, but good wifi) while Ed went in for the procedure.  They had told me it would be about 30 mins (10 mins of prep, 20 mins for the procedure) and 40 mins later they came out to tell me he was doing fine but they were still draining fluid.  At about 5:15, they finally were done.  Dr. Gates had guestimated before they started that they would probably drain about 2 liters of fluid (since they drained about 3 liters two days ago).  Well the magic number?  6 liters of fluid!

And, Dr. Gates could not insert the drain horizontally where she wanted so after about an hour, she wanted Ed to stand up and walk some (yes, I know...he's not walking) so that the tube would move lower in his abdomen.  After dinner, Ed was able to sit up--which was very difficult and he felt very light headed, but continued to push himself to at least stand (walking was definitely not going to happen).  After laying him back down in bed, they then drained an additional 1+ liter of fluid.

Now if you'll recall, a liter of fluid is about 2.2 pounds--so that was about 15 lbs of fluid!

While all of this was going on, our case manager was working hard to now find a bed for Ed where the wound vac was no longer needed but they now needed to handle the PleurX.  She was working with facilities in Amherst and Hadley (which are most convenient) as well as one in Northampton, Leeds, Greenfield, and West Brookfield.  If the Amherst and Hadley ones don't work out, next choice would be Northampton or Leeds.  What a job though--some don't have a bed for a male patient, some don't accept our insurance (hard to believe since it's good insurance), some don't support PleurX, etc., etc., etc.  Originally they thought he might be ready today, but with the procedure for the PleurX, that certainly was no longer feasible.  So it could be sometime over the weekend.  We'll see.  We're both excited about making this step in the right direction, but we're also nervous.  The doctors, nurses, and specialists here at Cooley have been great and Ed has gotten tremendous medical care.

We'll see what tomorrow brings.  We're hoping this drain helps keep him "dry" and that we can battle any infection that sticks to the drain.  We also hope the swelling continues to go down so he can work on walking and moving around more.

So please keep the prayers coming and have a good weekend.


Thursday, April 4, 2013

Thursday, 4/4

As promised, I went over to be with Ed in the morning.  Although today was less stressful (at least for me), it was busy.  It's amazing to me how hard it is to keep track of time and I can look up and several hours have passed.  Throughout the day I am making notes to keep track of things.

Our case manager, Chris, stopped by this morning.  She is still looking for a bed in rehab for Ed.  She's hoping to secure one at two of the in-service facilities in Hadley/Amherst.

Carol, one of the wound ostomy nurse, was in next and spent some time checking Ed's wounds and tending to those.  She identified a couple pressure ulcers on his buttocks so tended to those and implemented a strict schedule for rotating Ed and keeping him on his side.  She also identified a small leak on his right side which we could not figure out from what.  But a small amount of liquid was leaking out.  The leak seemed to be less later in the evening.

Ed did a good job eating his breakfast and then his lunch.  After lunch, the physical therapists came to get him out of bed and into a chair.  This took a little bit, but Ed did a good job of getting into a standing position and then getting into the chair with the help of a walker.  They had him sit up straight, feet on the floor, for 30 mins and then he could recline for 30 mins.  But no more than an hour in the chair (per Carol).  As difficult as it was for Ed to move, it was very good for him to stand for a bit and use his legs and feet.

Ed did experience a great deal of pain when they put him back into bed.  Looking back at my notes, I could see that his pain medication was wearing off at that time.  Rolling him to the opposite side two hours later was thankfully less painful but still sapped a lot of energy.

Rob, our PA, came by to see us to report on Ed's condition.  Said that the fluid from the abdomen was infected.  No cultures had developed yet but they would wait another 24 hrs.  In the meantime, antibiotics are being given.  If there are other specific infections they will changeup the antibiotics accordingly.  They are also continuing diuretics to help reduce the swelling (while not stressing the kidneys).  As Rob said, it's a slow process because he's pushing the kidney to work hard, but doesn't want to push it too hard and cause damage.  Once Ed is off all IVs and both the antiobiotics and diuretic can be administered with oral meds, he can be released to rehab.  Rob thinks this might be in about 48 hrs!  So now it's just a matter of our case manager finding a bed for him!

Ed then had some dinner which is good since it's so important for him to eat and get some protein into him.  Another roll to the opposite side and when I left he was resting comfortably watching the Red Sox game.

We'll see what tomorrow brings but please keep sending the prayers.  

Wednesday, April 3, 2013

I Never Liked Roller Coasters...

Last week, I tried to define each day as either a "good" day or a "bad" day.  That was going to be my gauge on this journey.  But unfortunately, what I realized today was that I cannot define this at the "day" level.  Instead, the day, like today, just "is"...and throughout today there were some "good" moments and then there were some "bad" moments.  Some describe this as a roller coaster and I would agree, my day--hour-by-hour--is a roller coaster of good and bad.  I try to be strong for Ed.  I try to keep a clear head and take many notes and apply my logical thinking and problem solving skills to help us make informed decisions.  But then I get smacked up side the head when I look at Ed laying in that hospital bed trying to battle all that is happening to his body.  I will be strong for him and I will find comfort and support from the many friends and family who are there to help and there to pray.  And I will ride this roller coaster as long as there is still some good mixed in with the bad, since I don't particularly care for the alternative.

So now that the emotional part of me is done writing today's intro, let's get down to facts about our day.

I attempted to go into the office today and, in fact, it was good to focus on work for a period of time.  That was, of course, until I got to the hospital and they were sharing "bad" (there's that word again) news with Ed and really needed me there.

Okay, sure, the doctors wouldn't call it "bad" news.  Rather, they are still concerned about the fluid in his abdomen which could be infected and is also preventing the wounds from healing.  So they wanted to put in a drain.  Dr. Gates came up and explained all about the drain (PleurX) to us--how it's inserted, how to drain it, etc.  After an ultrasound and the fact that you can't put in a drain if there's an infection, we agreed to have them draw fluid for analysis and while they were at it, also drain about a liter of fluid to help provide some relief.

Of course, I won't get on my soapbox about who knows what would have been done if I didn't press them to move in one or the other direction.  The fact was that Ed wasn't allowed to eat or drink anything after breakfast in case they did the procedure and now here we were at 3:30 PM and still no definitive answer.

So once we got things moving, they brought Ed down to Interventional Radiology where Dr. Gates and her staff ended up draining about 3 liters of fluid (which equalled about 6.8 lbs).  The liquid was "thick and icky" so it likely infected, but we will know more after testing.

We were then back up to Ed's room around 5 PM.  It was quite a busy and emotional day.  Needing to determine if he would have another surgery to put the drain in, then needing to move him to/from his bed to a stretcher for the procedure.  Then on top of that he hadn't eaten or drank anything since breakfast.  So it was a very draining day.

Good news is that the swelling in his legs is going down very slightly, but it went down.  Also, he didn't have any pain meds all days--went from 8 AM to 8 PM--which is quite amazing when he was getting them every 4 hours just yesterday.

Still concern about the liver and will watch the fluid accumulation in his abdomen.  He's already on antibiotics so by draining the fluid we're hoping it will be more effective.  Analysis of the fluid will also help to pinpoint appropriate antibiotics.

And the craziest thing is that on top of all this, we have a case manager coming in asking us which rehab facility we prefer and she's trying to secure a bed for Ed at one.  Like I even have a clue when he'll be able to get out of the hospital.  Whatever...I guess everyone has their job to do.

I will be back with Ed in the morning...too many curves in the roller coaster right now not to be together.

One day at a time...please keep up the continued prayers...

Tuesday, April 2, 2013

One Week Ago Today

It was one week ago exactly as I write this that Ed and I were in the emergency room at Cooley waiting to be assessed.  My how our lives have changed--both in good and bad ways.  Good ways because Ed is still here when we weren't sure he would be after surgery.  Bad ways....well, that's obvious.

Today was a long day at the hospital.  It feels like every day is a roller coaster and my emotions are all over the place (as I can imagine Ed's are as well).

Ed asked me to try to work from the hospital today so I could be with him.  That was only semi-successful.  I did having a phone call "meeting" for about an hour while he slept, but that was about it and that was about all the sleeping Ed did as well.

Soon after I got there, his wound ostomy nurse, Michelle, arrived followed closely by Dr. Marvelli.  Ed's wounds are not healing (partly because of the avastin he was on but partly because of the amount of fluid in his body).  As a result, fluid is seeping out through the wound and also through his colostomy.  So Michelle put a new bag on that had a draining tube (otherwise they were emptying the bag every 20-30 mins).  She also put a "wound vacuum" on his wound.  This is intended to draw any fluid that is seeping through into a tube/container versus trying to absorb it with a bandage.  She also ordered an upgraded air bed for Ed.

Physical therapists arrived shortly thereafter but since Ed was pretty wiped out and the bed was (supposedly) arriving soon, we decided to try to coordinate Ed moving with getting into the new bed so the PTs left.

Swelling is still Ed's biggest issue.  It appears to have gone down in his abdomen but his legs are still quite swollen and difficult to move.

Ed had part of a sandwich for lunch and he ate most of his dinner as well.  He also had some Ensure (with ice cream...which makes it more palatable).  These are all good in helping to increase his protein which will help heal the wounds.

His case manager stopped by and we talked briefly about rehab.  Dr. Bowers also sent a case worker from Cancer Care to talk with Ed (and she also stopped by to talk to me later in the afternoon).  And Dr. Bowers came by to meet with us as well.  So all of this kept us busy.

There were some things that kinda frustrated me, but I'm learning to deal with them effectively.  For example, we weren't getting much information in terms of his treatment.  Dr. Marvelli simply said he needed to eat and get protein into him.  But no one was explaining what tests they were doing or what the results were afterwards.  So I did ask to have the Physician Assistant assigned to stop by and talk to us.  And then I ran through my questions.  For example, Ed had a chest x-ray while I was there (yes, another thing that happened today), so I asked her about why (to check for fluid in his lungs) and what the results were (that it has gone down--supposedly they saw some in the lower-right side a couple days ago when they did an x-ray).  They also took a urine sample earlier in the day--so I asked about that.  Just kinda crazy that I needed I seek this info out.  I just "assumed" that someone would be around and provide a general update.  Now I know!

Plus, because of the whole new bed, they had postponed giving him a bath and changing his bed linens.  Well, because things were pretty busy on the ward, he didn't get his bath until about 6:30 PM.  Not that this was so terrible but you can bet I wasn't going home tonite without this happening.

And, finally, around 9:15, they got him into his new bed.  Both Ed and I were expressing our optimism and basically figured we'd get him settled into his current bed.  But they got him into it, did all his vitals, gave all his meds, etc., and he was finally settled in for the night around 10:30.  So it was a late nite for me since I wasn't going to leave til he was settled.

Now that I'm learning the ropes, they better watch out!  Just like anything else, you really need to know how to advocate for yourself and just be sure to ask questions and be sure they respond to your needs and requests.

Ed is still not out of the woods.  We really need to get the swelling down so he can start moving more which will help with the liver as well (which is having a hard time).

But Ed agrees, as bad as things seem right now, he certainly is in less pain than he was a week ago. 
 So onward we go... Please continue with the prayers. 

Monday, April 1, 2013

Monday, April 1st

First let me wish our niece Lexi a very Happy 12th Birthday!!

Today I put a few hours into work and then headed to the hospital.  Ed said Dr. Marvelli stopped by to check his incision (said it looked good).  The nutritionist also stopped by and ordered some lunch and dinner for Ed.  For lunch he had an egg and some toast.  Dinner was half a pb&j and some milk.  So good news is that he ate something--just a bit but better than nothing!  And we picked out his meal choices for tomorrow.  Bad news is that he had stomach cramping after dinner which caused him some pain.

While I was there his physical therapist came by and helped him move from the bed to the chair.  Wasn't in the chair for more than an hour when his wound ostomy nurse stopped by.  She talked to Ed about the colostomy and then replaced his bag.  She was very caring and really took the time to explain things.  A case manager also came by to introduce herself.  She will help us with insurance and decisions for future support.

It was a busy day and Ed didn't get any rest.  He still has significant swelling in his lower body and this makes moving very difficult.  He is off all regular IVs--just one when they give him antibiotics and for pain they just give him a oxycodone every 4 hours.  They still have him on a diuretic until they can get the swelling down.  Hoping that once that happens, he can move around a bit more.  He's also lost his voice which is odd and also makes it difficult for him to communicate.

So overall a good day although still a ways to go.  More tomorrow...

Sunday, March 31, 2013

Easter Sunday

Well there was no celebrating of Easter today for us.

Dan and I got to the hospital around 9-9:30 AM.  They had given Ed a "bath" and he had spent some time sleeping on his side the night before.  They also changed his bandage and emptied his bag.  Ed was also off the PCA pump (self administered pain meds).  They continue to administer pain meds as needed especially since Ed had some severe pain when his stomach would cramp (although it would only last a couple seconds).

Dr. Marvelli stopped by to check on him and confirmed that his abdomen was full of a lot of fluid when he operated.  Dr. Bowers also stopped by and let me know that we have a long road in front of us.  Ed really likes him and Dr. Bowers also knows Ed well and did his best to encourage Ed.

They gave Ed some diuretic to help with the swelling which definitely produced more urine.  His stomach/bowels were grumbling which was good since these tend to "go to sleep" after surgery.

Around 1 PM, Dan and I left so that Dan could head back to Waltham.  When I returned to the hospital at 3:30 PM, Ed was sitting in the chair, had been shaved, and had an Ensure (which he didn't drink much of).

His physician's assistant, Rob Levine, stopped by and provided some good information and also see how Ed was doing.  Ed has a sore in his mouth which he diagnosed as Thrush--so treatment for that next.  They also drew blood to check his levels.  If it looks good, they'll remove his temporary port tomorrow (the one inserted during surgery).

Ed even had a bit of his liquid dinner--some sips of the soup, raspberry ice, and grape juice.  This was great since he hasn't felt like anything so far.

He also stayed in the chair until the shift change at 7 PM and then actually shuffled from the chair to the bed, using a walker.  Previously he was only able to pivot and not really "walk" much.  This was great progress.

His nurse for the day was Chris who we liked.  And his night nurse Oksana was great in getting him back in bed, making sure he was comfortable, and being really clear with Ed (regarding pain, breathing exercises, etc.).  A nice surprise was that Christina stopped by on her way out (she was working on another floor) to wish Ed a Happy Easter.

So Ed slept a good portion of the day but was awake for a portion as well.  Eating a bit and using the walker to move between the chair and bed were all great accomplishments.  They continue to keep an eye on his heart rate (which continues to be high) and are working to get the swelling down.

Tomorrow I am going to try to go to work for a bit.  Ed would like me to go to work in the morning and then go see him in the afternoon.  We'll see how that goes.  I'll continue to keep you posted.

Saturday, March 30, 2013

Saturday: Day 3 Post Surgery

Today Ed was quite tired and slept most of the day.  They did get him into a chair again but I think he stayed in that too long since the swelling in his legs seemed to get worse and it was difficult for him to get back into bed.

Ed's nurse today (a new gentleman) was less attentive and I think this bothered Ed at some level.

I didn't see any doctor's today (although Ed did) so no results from his leg scan yesterday. Ed did say they came in this morning to take a chest x-ray.

The good news is that in the afternoon, they moved Ed to the less critical section of the floor (Room #15).  This means a quieter room and no constant monitoring of vitals.  I think the change in room, getting a new nurse, and getting back into bed helped even though he continued to sleep all afternoon.

We did limit his visitors today since he was certainly not up to visiting.  Dan and I ended up leaving a little earlier usual.  I'm hoping tomorrow will be a better day.

Thank you for your continued prayers.

The Easter Bunny that Dr. Bowers brought Ed.  It made him smile.

Friday, March 29, 2013

Friday: Day 2 Post Surgery

Great surprise today--Nurse Christina was back!!  They were short-handed and called her in on her day off.  Yippee!!  Not that we didn't like Pat, but anyone pales in comparison to Christina!  So that was a nice start to the day.

Ed had a good night of sleep the night before so that was good as well.  The swelling had not gone down.  It was most noticable in his legs but you could also see it in his torso, abdomen, arms, and hands (okay pretty much everywhere).

They got him out of the bed again and he sat in a chair for a bit.

A nutrional specialist/dietician came in and shared with us information about what kind of diet Ed would need to follow once he begins to eat.  This was then followed by a visit from an Occupational Therapist and a Physical Therapist who got Ed to standup, move his feet a bit, while they monitored his heart rate.  His heart rate was still elevated but did go up too much when he was doing this which was a good sign.

Dr. Marvelli came by and removed the dressing on his incision.  It looked pretty good...and had a lot of staples.  For those who want details, the incision runs vertically up his lower abdomen past his belly button (maybe out 10"?).  Ed let me take a picture, but I'm not posting it here (at least not yet).

Dr. Bowers came by again to visit with Ed (we really like Dr. B) and Fr. Vern stopped by mid-morning as well.

Ed's incision began to "weep"...probably from moving around and the swelling.  Nothing terrible, but definitely took several guaze pads to keep it from soaking his johnnie.

They also ordered a sonogram of Ed's legs to check for clotting.  No word on that before we left for the day. 

Ed's heart rate was still elevated throughout the day and he was much more tired today.  They tried to take him off the oxygen for a bit but then put him back on it.  They also talked about removing his catheter, but that didn't happen either today.

Still no temperature or sign of infection which is good.  Hopefully tomorrow he will feel a little better.

We'll see and I'll continue to keep you posted.

Thursday, March 28, 2013

Thursday: Day 1 Post Surgery

Today was a busy day.  Ed had a new nurse--Pat.  She was older but very nice and attentive.  Ed got a sponge bath and Pat was really nice giving him a back rub.  They also got him to sit up and move to sit in a chair.  Now anyone who has had major surgery can tell you, this was a major feat!  He stayed in the chair for about an hour.  Concerns for today included the fact that his heart rate was still high (blood pressure was good though) and that he was producing little urine.  They gave him about 1 liter per hour for about 6 hours to try to increase his fluid.  Temperature was still good though and no signs of infection.

A wound ostomy nurse also came by to talk with us and gave us some brochures/information to read about his colostomy.

They also had a sonogram taken of Ed's heart.  The woman who did it was very good about explaining to us what she was doing and what we were seeing on the sonogram.  Very interesting.

In addition to seeing Dr. Levrault; Dr. Marvelli and Dr. Lawlor both stopped by.  I am quite impressed that Ed's surgeon and anethesologist both stop in to check on him and see how he is doing.  Such GREAT doctors!

Ed didn't sleep much at all during the day and he didn't sleep well Wednesday night either so he was getting quite tired by the evening.  When Dan and I went to leave around 9 PM, we discovered that his legs had become quite swollen.  His evening nurse, Cathy, said this was normal.  We'll see what tomorrow brings.

Cards and pictures from Lexi.

Wednesday, March 27, 2013

Emergency Surgery

What a few days it has been!  Ed had emergency surgery Tuesday nite/Wed morning.  Below is a recap of the past few days.  I'll try to provide daily updates moving forward.

Tuesday, 3/26
Ed was home again today.  He continued to be fatigued and trying to find the right combination to regulate his bowel movements and deal with the diarrhea he was experiencing.  I got home late from work after stopping at the grocery store to pickup some high fiber foods for Ed.  I had leftovers and he had some soup and crackers.  Around 9 PM we finally sat down in front of the TV.  Ed used the bathroom and then came out and sat on the couch in tremendous pain.  The pain was in the middle of his abdomen and it was so intense it was causing tears.  I called 911 and the EMTs checked him out, got him into the ambulance, gave him some pain killers and we were on our way to Cooley Dickinson Hospital.

They put him on an IV which caused him to be "cold" and tremble terribly.  That finally stopped and they brought him into x-ray since they were sure he had some type of blockage.   His vitals showed very low blood pressure (and Ed usually has high blood pressure due to this chemotherapy) and they pumped him full of a lot of fluids quickly (putting compression sleeves on the IV bags).  They had decided they were going to insert a tube down his nose and throat into his abdomen to drain liquid from the top of the stomach.  However, his vitals weren't getting better and they determined they wanted to do a CT scan to get a better look.  Once they did this, they were convinced he had a perforated bowel.  It was now about 3:00 AM.

A surgeon, Dr. Christopher Marvelli, came in to talk to us about this and the risks but that we really didn't have any choice.  They needed to operate and quickly.  And he was direct in the risks involved.  He hopefully would find the hole and if he did would need to do a colostomy.  If he coudn't find the hole or if things looked too bad, all he could do was close Ed up.  Dr. Marvelli called Ed's oncologist Dr. Bowers.  Dr. Bowers talked to Ed and then later called back to talk to me.  Both doctors asked if I had someone I could call to be with me.  Dr. Bowers told me "it didn't look good" and I should have someone with me and should call Dan as well.  I needed to prepare for the worse.  Both Ed and I trying to prepare but we clearly weren't prepared for this.  Are you ever?

At 4:15 AM on Wednesday, 3/27, they took Ed into surgery and I was alone in the Kittredge Surgery Center at Cooley.  Seriously, there was no one else there!  Anyhow, Dr. Marvelli told me it could take about 2 hrs, but again, depended on what he found.  Ed told me to be sure to call my sister Cathy to be with me.  I promised him I would once he was in surgery.  And I did.  At 4:15 AM I called her to tell her that Ed had gone into surgery and "it didn't look good".   I then called Dan and told him he needed to come home.  I hesitated to contact my mother after what she's been through these past couple weeks with the lose of my brother.  In fact, I hated "bothering" both my sister and Dan as well, but they all made it clear I needed to call them.  I called my mother at 6:00 AM to let her know and she came over as well.

Dan arrived just around 7:00 AM and shortly after (around 7:15 AM), Dr. Marvelli came out to tell us that the surgery went well.  There was a perforated bowel, clear liquid/air in the abdomen and he was able to do a colostomy.  The anethesiologist (Dr. Lawlor), who we met at 4 AM, came out and explained how things went and that Ed had a breathing tube and that we could go up to the critical care unit in a little bit to see him.

We were so thankful.... A few hours earlier, we didn't know if Ed would make it out of surgery.  Or, if he did, whether they were able to find and repair the perforation.  We were so lucky.

Wednesday, March 27

Around 8 AM we went up to the critical care unit to see Ed.  His doctor is Dr. Rick Levrault--a young, tall and handsome doctor (as described by Dr. Bowers).  Dr. Bowers was there when I arrived--what a relief to see a friendly face--it meant sooo much to me.  Dr. Levrault was terrific too though.

Ed was pretty much out of it and their first goal was to monitor him and maybe remove the breathing tube in the next day or two.  I made phone calls to our priest Fr. Vern (who I did try to reach before Ed went into surgery), my sisters, folks at work, and a couple other of Ed's friends.

Ed's nurse was Christina and she was a gem!  She was young and sweet and very attentive and caring (and cute/pretty...but that had nothing to do with her nursing abilities!).  She was not working in the critical care unit again until Saturday which bummed Ed out.

After a couple hours, Ed was awake and with the breathing tube in, he could not talk, so he resorted to writing first on the palm of my hand and then we gave him a pen and he made notes on a piece of paper.  Now mind you, it was not like he was sitting up writing a letter.  Rather, he was laying back in the bed, head back, and using his one hand down on the bed to write out short words.  He was quite ambitious and even used his energy to poke fun at all of us and to try to fix up Dan with his nurse Christina.

Fr. Vern came by to visit and gave Ed the Anointing of the Sick.  That meant a lot.  Dr. Marvelli and Dr. Lawlor both stopped by as well to check in on Ed.  By early afternoon, Ed was breathing on his own and they could remove the breathing tube!  Yeah, victory #1!

Dan and I headed home around 8 PM.  I was exhausted (no sleep at all the night before) and Dan was tired since I woke him up at 4 AM and he had to drive 2hrs to get to the hospital.  But we were happy the breathing tube was out!

The ambulance that brought Ed to the ER.  The BTown EMTs were terrific.

Vitals while in the ER.  High heart rate; low blood pressure.

The surgery board at Cooley.  Dr. Marvelli was Ed's surgeon.

Saturday, March 23, 2013

A Week Later

Actually a week and a day since we had Michael's funeral service.  Back to work this week.  There were good days and bad days.  Usually in the morning...you just wake up and have a heavy heart or are sad.  Work is a good distraction and keeps my mind busy during the day.  Then at night I'm just tired and so sleep is good and shuts out the world.

I'm learning to adjust to life without Michael.   I didn't see Michael everyday so the moments of sadness are when my mind wanders to knowing he is gone and it will be the times, like Easter, that will be difficult.   I worry most about my mother though.  The two of them lived together for a number of years and therefore were companions in daily living.  My mother is a strong woman and she will keep moving on, but I wish I could do something to ease her pain and make the sadness and grief go away more quickly.  But as we all know, we all grieve in our own ways and on our own timelines.  There is no right; there is no wrong.  We just march on the best we can and I know my mother is doing this.

It has been a tough week for Ed.  He is still struggling with constipation and fatigue.  Sorry about talking about constipation again, but it is a natural bodily function and for anyone who has ever suffered from this, it is very painful and screws up your entire system.  (And besides, he has colon cancer...so kinda hard to avoid these topics!)  So Ed is struggling with that and on top of that is heavily fatigue.  He did go into work Tuesday, didn't overdo it, and I saw some life in his eyes and color back on his face.  But Wednesday was back to a bad day...very tired, not able to do anything.  Thursday and Friday he did small things around the house, trying to find that balance between doing absolutely nothing and not overdoing it and tiring himself out.  Still is not "regular" and so still trying to find the magic combination to solve that problem.

We were hoping to go away this weekend--I think it would be good for his spirits--but cancelled since he wants/needs to stay close to home.  We'll see how he's feeling tomorrow.  Maybe a day trip somewhere, just to get out of the house.  I know part of the fatigue is due to his body fighting the cancer but I think part of it is psychological too.  It's been a very tough couple weeks.

"One day at a time, sweet Jesus...that's all I'm asking of you..."

Saturday, March 16, 2013

Remembering Michael

Yesterday was Michael's funeral.  Somehow, we made it through the week.  Of course, we didn't have much choice.  The gray, gloomy day on Monday and the rain on Tuesday matched our mood.  But Wednesday the sun began to shine and we know it was God's and Michael's way to tell us we had to move on.  That life continues and our job now was to remember Michael and to share with others the love he had for all of us.

Monday was difficult as we waited by the phone for the call from the medical examiner's office.  It never came and so our grief turned a bit to anger.  How could they tell us they would call us and we waited by the phone all day and no call came.  We've all experienced that...waiting for a call or for a service person to come to the house--you wait, you listen, you don't dare do something that would cause you to miss the call or the doorbell or whatever.  And then it never comes and then you're just pissed off!

So Tuesday when my Mom got the option to continue to wait or drive to the medical examiner's office in Worcester, she of course, elected to take control of this situation and drive to Worcester.  No more waiting by the phone for these Jasmin ladies!  And once she was able to meet with the medical examiner, then everything else started to fall into place.  They were able to release Michael's body and the funeral home and the church could confirm when we could have his funeral.  What a relief it was when we could finally say Friday at 9:30!  It gave us a definite date and time to move forward to.  And we were so thankful that this was not dragging into the following week!

With the funeral time set, we had our list of "to do's" (we like our checklists) and worked through them.  We together picked out Michael's urn, made photo collages, finalized his obituary and eulogy, made necessary phone calls, made arrangements for the reception, and picked readings and hymns for the Mass.

Thursday was another cold and gray day and we asked Michael to warm things up a bit for Friday.  And sure enough, the sun peeked over the horizon Friday morning and the day, although still cold, was sunny with a bright blue sky.  Now, I don't know how much pull Michael really has up in Heaven and one could say God himself was listening to our prayers.  But I also know that my brother could have nagged God for quite some time to grant us our wish!

Now I know this can sound odd, but Michael's funeral on Friday was a nice day.  Not nice that we were laying my brother to rest.  But that the Mass, the eulogy, the presence of friends and family--all of this could not have been better.  It was a day to cry and a day to smile and laugh and hug and to remember Michael and to be gifted by the love of family and friends who were present either physically or in spirit and thought to support my family and celebrate Michael with us.

We are in awe at the number of people who turned out and the number of people who baked and helped with the reception.  We know we are truly blessed and thank God for all of you.

After the reception, our family went out to lunch at Zoe's.  It was a nice lunch--a typical Jasmin family get together.  It was a quiet time to talk about the day and to spend a little more time together before we all went our separate ways.

My heart still aches and sadness still comes and I am still in awe that it was just a week ago that our lives changed forever.  But it is a reminder of the importance of family and friends and living each day to the fullest and living it being kind and considerate of others and showing compassion, care, and love.  I have the following quote on my refrigerator:  "I've learned that you should always leave loved one with loving words.  It may be the last time you see them."  That is so true and I know my family finds comfort knowing that the last time each one of us saw Michael, we did leave him with loving words and a hug and there is no doubt that he knew we loved him and he loved us.  That is living life with no regrets and if that is what we all need to be reminded of this week, then that is Michael's parting gift to us all.

May God bless you all and may Michael rest in peace with God and with our Dad and all our other departed relatives.  Until we meet again...


CT Scan Results

In the midst of this awful week, Ed had a CT scan on Monday and we had an appointment with his doctor Tuesday morning to review the results.  As our world is spinning around us, this event came and went and was hard to register in light of everything else.

In hindsight, prior to last Sunday, we were anticipating some "bad" news since Ed has not been feeling well (pain, fatigue, etc.).  We thought for sure that the cancer was progressing.  Of course, after the sudden passing of my brother on Sunday, we thought "how in the world could we get more bad news this week?"  It would feel like kicking us while we were down.

Thankfully, though, there was no bad news.  In fact, the results were anticlimatic which caused us to just move on and not really acknowledge that the results were not only not "bad" but they were "good".  I guess in light of the events of this week, it was hard for us to categorize and recognize this as "good".  But as I'm writing this I need to acknowledge that it was good news and a gift we should acknowledge and thank God for.

In summary, the CT scan showed no new growths.  Some very minimal shrinkage and a couple spots of possible growth, but nothing that Dr. Bowers felt could accurately be measured (they were talking millimeters).  Words such as the following appear in the report:  "stable," "slightly smaller," "mild decrease".  The final "impression" in the report:
  • "Overall, numerous hepatic masses are very similar.  Possible mild progression since 11/28/12."
  • "Mild increase in amount of ascites."
So our focus with our discussion with Dr. Bowers is managing the pain and fatigue.  Constipation is a large issue right now.  I have to say, I was reluctant to share with the world that Ed has "constipation".  This is one of those private bodily functions we don't talk about.  But then I realized, Ed has colon cancer.  And so if you're not going to talk about colons and bowel movements and all the things that part of our body is responsible for, then I would only be telling half of the story.

So here I am, talking about bowel movements and constipation!  And I need to because the constipation is resulting in terrible stomach cramps for Ed.  Ed has Ducolax and Miralax and whatever other "lax" products you could find to try to manage this.  So far he has not found the perfect solution but he's being good about taking this every day to help.  In terms of body pain (bad, legs, buttocks), Dr. Bowers says he needs to take the Nucyenta every 4 hours.  The prescription Ed has allows for this but Ed tends to hold off, not wanting to take it every 4 hours, like somehow he can manage through the pain.  Not!  So I hope Dr. Bowers convinced him it was okay and he should keep taking the pain medication every 4 hours to try to stay ahead of it.  And the fatigue is learning to manage his time/life better.  If he thinks he can do something for an hour, then only do it for 30 mins.  Ed tends to overdue it and then pays the price afterwards.  So he needs to unfortunately work fewer hours and rest more because it is when he overdoes it that he crashes and is down for several hours.

But this is new for Ed.  He is used to the first 1.5 yrs-2 yrs when he went for treatment and then went to play golf afterwards.  He had no side effects and so having to try to manage these effectively is new for us.

To help in the short-term and to give Ed a break, we have cut out the Irinotecan for the next 6 weeks.  Since there are no new growths and we are staying ahead of the tumors, we agreed giving Ed a break from one of the chemo drugs would be good (he will remain on the Avastin and Xeloda).  Dr. Bowers was clear we wouldn't go more than 6 weeks though before another CT scan.  But hopefully giving Ed a little break and with the fact that spring may be arriving soon, will help give him the lift in spirit and energy that he needs right now.

Sunday, March 10, 2013

Loving You Always Mike

My heart has a whole in it.  I am numb and the tears come without warning.  My loving brother passed away last night.  He passed from this life way too young and totally unexpected.  He was only a year older than me and so we grew up together.  This meant we fought like the dickens but there was also that bond--no matter what, he was my brother.

You had your cross your bear (don't we all), but you were there when Dad needed you in his final days caring so tenderly for him.  And you have been there for Mom.  We all found comfort knowing you were there in case anything happened to her and to do things to make her life easier.

You loved us all.  You loved the holidays and looked forward to us all being together.  You so loved your nieces and nephews.  And how they all looked up to you.   "Uncle Mike"  You made them laugh, you spoiled them, and they loved you so.

Your life was cut way too short.  But you lived life to the fullest...you worked hard, you played hard.  You enjoyed the summers with golf and fishing and the winters with skiing and watching football and nascar.

The only comfort at this time is knowing you are with Dad...that life has come full circle.  Our lives will never be the same.  Our family will never be the same.  You will be forever in our memories.  And we love you so much!

Rest in peace my beautiful brother.  May God take you in his gentle hand and lead you home...


 

Saturday, March 9, 2013

Bright Sunny Saturday!

 
This morning I woke up to a bright sunny morning--not a cloud in the sky!  Then I noticed our hibiscus is blooming.  Both signs of spring that will be here before you know it.  Yes, there is still snow on the ground from yesterday's storm--we got about 6-8" here.  But we've had so many gray, snowy, rainy days, seeing the sunshine is so nice.  I'm planning to take my morning walk outside to soak up some of this sunshine (versus the treadmill).  And tonite we change the clocks.  Yes, we lose an hour (which I'm not thrilled about) but it will be lighter later (it's so nice to drive home from work and have it still be light out).  I do love the change of seasons in New England!

In terms of how Ed is doing.  This week was better than last and I judge that by whether he had more "good" days than "bad".  He only worked a few hours this week so he also was able to do a few things around the house.  However, if he overdoes it, it does wear him out.  He tires very easily. The stomach cramps seem to have subsided which is good.  Overall a better week.  Just in time for his next treatment.  Ed has a CT scan on Monday and we'll meet with Dr. Bowers on Tuesday and he'll have his next infusion on Tuesday as well.  So if there's any pattern developing (which we haven't been able to pin down quite yet), next week cramping and pain will return.  It will be good though to hear whether the CT scan is showing any change since Ed is certainly feeling different.

I'll certainly keep you posted.  Til then...enjoy the sunshine!


The 6-8" of snow we got on Friday.

A beautiful bloom to brighten my Saturday morning!



Sunday, February 24, 2013

After the Storm (actually, 2 weeks after)

Okay, so I wasn't very punctual about posting after the "Blizzard of 2013", or what is being called Storm Nemo.

Needless to say, we fared just fine.  Ended up with about 18-20" here.  Thankfully we never lost power--that is just terribly inconvenient!  Here are some pictures from that day.

View of the back deck through the slider.

View out the front window.

View of the front deck out the front door.

Me shoveling the back deck.

I'm enjoying this too much

Not sure Ed is enjoying this...



Out in Waltham, Dan got about 26" and didn't get plowed out until Sunday afternoon.  He did a time lapse video which you can view here: 

http://www.youtube.com/watch?v=9831yMvRcrU

His car is the one on the left so if you watch closely, you'll see Dan cleaning it off.  Pretty cool!

Last weekend (Feb 17th), my mother and I drove out to see Dan to deliver some stuff and for Grandma to see the apartment.  Grandma loved seeing the place and the two of them always seem to have things to talk about.  It is a special relationship!  Plus my mother and I got to spend 3 hrs together on the drive out and back so that was nice.

Grandma and Dan having lunch together in his living room.


Ed was planning to go but was not feeling well and did not feel he could make the drive out.  He has been experiencing stomach cramps,  (which we think is due to irregularity) and pain in his shoulder (due to arthritis), pain in his butt and legs, and problems sleeping.  We're trying to manage all of this but we haven't found the magic combination.  He's got a combination of medications--Ducolax and Miralax (to treat constipation), Clyindamycin (to treat diarrhea), Nucynta (for pain), Lidoderm (Lidocaine patch for shoulder pain), and Tylenol PM (to help with sleep).  He is also trying to stay off his feet for long periods of time.  All of this is very draining on him and so he also lacks energy.  And we have not found the right combination to get in front of all of this.  So this has been very draining on him.

He did have an MRI on his shoulder and Dr. McBride (orthopedic specialist) gave him another shot to relief the pain.  But that really hasn't helped and so they will need to discuss what, if any, next steps they will take.  Ed has his next CT scan on March 10 so we'll see how things are going.  But his biweekly appointments with Dr. Bowers shows really no significant changes--blood work and size of his liver continues to look stable.

It's just been tough on Ed lately being in constant pain and having no energy.  And I'm trying to be helpful and patient, but there's not really anything I can do to help.  We are three years into this journey so we do know we've been blessed to date.  It would just be nice if we could figure this thing out.  As Ed says, "it not bad enough I've got cancer, I've got to deal with all this as well?"

So we continue on.  We find joy and are thankful that Dan is settling in to the next chapter of his life and we are looking forward to the spring.  I love how the days are getting longer and Ed is making plans to regrip his golf clubs.  So onward towards Spring!




Friday, February 8, 2013

Before the Storm

Yes, it's Friday morning and the big Nor'easter is scheduled to arrive within the hour.  I thought I'd do a quick up on the blog before the storm arrives since I'm sure my next post will be of piles of snow!

This week is what I would call trying to get back to "normal" now that Dan is settled into his new apartment.  Now I HAVE to thank God that things worked out such that he moved in LAST weekend and that we had good weather for it.  Could you imagine if we had planned to move this THIS weekend--would not have happened and really would have thrown a wrench into things.  What I'm even more grateful for is that Dan only has a 4 mile drive home from work so I'm not worrying about him having to drive a distance in this storm.

Earlier this week Ed did go see his orthopedist again about his shoulder (since the shot he got last time didn't really help).  They have scheduled an MRI for next Monday and then a follow-up appointment next Friday.  So more to come on that (hopefully).  He had his last chemo treatment yesterday.  The tests show no change--which is good.  He has another regular appointment in 2 weeks and then they'll do his next CT scan.

In terms of the body aches, queasiness, etc., it's all about trying to manage this.  In terms of the leg pain Ed experiences it's when he's on his feet too long and so needs to learn how to manage this.  Now that we've got Dan settled, maybe we can spend more time focusing on this.

Well, I hope you're all getting ready for the storm.  I'll be sure to post afterwards. In the meantime, be safe!

Sunday, February 3, 2013

Move In Day

Today we moved Dan into his new apartment in Waltham.  Dan was home two weeks ago to get things packed up (over MLK weekend).  Thankfully our brother-in-law Tim helped load the truck Friday night (since Dan was still in Beverly).  This morning Ed and I drove out and met Dan at his new apartment.  After unloading the truck and my car, I focused on cleaning and unpacking the kitchen and the bathroom and then made the bed.  In the meantime, the guys (Dan, Ed, and Dan's friend Nate--whose family he has been staying with for the past 6 weeks) put together furniture and got the living room setup.  Dan and I then headed to the grocery store.  After that we returned the rental truck and then picked up pizza for dinner.  Ed and I then drove back home getting home around 11 PM.  A long day but Dan is fairly well settled in.  There's still some unpacking he needs to do, but stuff he can do as he has time.  And now that he only has a 15 min commute to/from work, he'll have plenty of time!  We are so happy for him and thankful that he found a nice place to live close to work and not so far from home either.


Tim helping us load the truck Friday night.

Bedroom - before


Kitchen - before
Living Room - before

Bathroom - before

Nate came to help!

The boys working hard (got the TV setup and so "checking" the cable)

Me enjoying a drink prepared by Dan.


Living room - after (semi done)

Bedroom -after

Bathroom - after

Kitchen - after

Monday, January 21, 2013

Mid January Already?

Where does the time go?  Can't believe it's mid-January already!

Dan spent the last three weeks in Beverly.  He went back out at New Year's and just came back this weekend (Martin Luther King weekend).  Our exciting news here is that he finally found a place to live!  It's a one bedroom apartment in Waltham about 3.5 miles from work and, better yet, no highway driving for his commute.  The 1.5 hr commute to/from Beverly every day is getting old.  He can't move in until Feb 1st but that's less than 2 weeks away.  So Dan came home this weekend so we could figure out what he had and needed for the apartment and also plan how we'll get him moved in.  Dan and I went shopping yesterday for a few essentials from glasses to dishes to simple things like a trashcan!  Needless to say, I'm having a lot of fun and can't wait to get him settled into his own place.  I know he can't wait either.  Nate and his family have been very generous allowing him to stay with them this past month and we can't thank them enough.  It is like his second family.

Ed continues with his biweekly chemo treatments and has some good days and some not-so-good days.  There are some days when he is tired and his stomach is queasy.  He also saw an orthopedist because of his shoulder pain and this was confirmed as being arthritis.  The pain in his shoulder can be pretty bad and he can't lie down to sleep because that makes it worse so sleeping has also been more difficult.  Anyhow, he did get a cortisone shot a couple days ago and we're hoping that helps.  If not, I'm not sure what our next options are.

Nothing new to report with me.  Work continues to be very busy so that leaves little time for anything else.  Me, Ed, and Dan did go to a UMass basketball game on Saturday which was a fun day just to get out and do something.  They retired Marcus Camby's number so that was neat to see as well.  I remember going to UMass games when Camby was playing--was it really almost 20 years ago?!?!

So I hope 2013 is starting off good for you.  Stay warm!!

Wednesday, January 2, 2013

Happy New Year!

Happy 2013!  I have to say I love how these holidays fell this year--two 4-day weekends in a row!

Christmas was a great time with family.  Christmas Eve was spent with Ed's side of the family.  After Christmas Eve Mass, we headed to Hardwick to celebrate with a potluck and Yankee Swap with our niece and nephew Missy & Dennis and various extended family (some people I don't even know!).  It was a nice evening and it was great to see my great nieces and nephews--William, Grace, and Bryce.  Christmas morning Ed, Dan, and I exchanged gifts and we could have just stayed home in our jammies but we were off to my Mother's to celebrate with my side of the family.  Another fun-filled day exchanging gifts, eating way too much food, and just enjoying each other's company. My only complaint is that the day was over too quickly.

Dan was back to work Wed morning.  He came back home Friday nite and was off again Monday morning (New Year's Eve day) since he had to work that day.  Him and Nate then went into Boston to celebrate New Year's Eve and Ed and I did our usual stay home and watch the ball drop on TV.

Happy 2013!

Santa has arrived!
 
Nieces Lexi and Ali at Grandma's Christmas Day
 
Nephews Nick and Matt
 
Me and my sisters (L-R Theresa, Marion, Cathy, me)
 
Me and Ed
 
Dan and Grandma

My Story

Lately I find myself moving through the days, being with others, laughing, and living life. Days pass quickly and grief, sadness, and feelin...